Friday, February 15, 2013

A New Title

I have a new title to add to my collection.

Chief Poop Inspector

You're all jealous of my glamorous life right now I can tell.

Emma and her quirky tummy are driving me to distraction.  In an effort to get to the bottom of the problem we went to the GP today - which resulted in a horrific blood collection experience and the auspicious job of me being crowned Chief Poop Inspector (and Collector - but lets not go there) for the next 3 days.  The pathology experience was horrible, humiliating and degrading.  Emma was hysterical and trying to run away all the while screaming blue murder and the 'helpful' pathology collector was a cow who implied it might be a good idea for us never to darken her door again.

My biggest concern with Emma's tummy problems is that when you combine them with anxiety they make for a slippery slope. When Emma eats - her tummy hurts.  So she doesn't eat - but that makes her tummy hurt too.  So she keeps not eating.  It's a very short ride from there to a type of eating disorder where the goal isn't to be thin it is to try and control anxiety and tummy symptoms.  Emma has already lost weight and hasn't grown in ages making her an 18kg, 116cm almost 9 year old (which puts her completely off the growth charts).

In some ways it would be easy if she just outright tested positive for coeliac - then at least we would know where to start.  My biggest fear is that this is all behavioural.  She had such a meltdown at the pathology place this afternoon - and another one again in the shops. I don't know what to do with her.  Is it me?  Am I doing a bad job parenting her?  Is it all my fault?  Or is something wrong with her?  If so, is it physical or emotional.  One thing I do know is that we had none of this before Murray's brain injury.  She has always been a bit highly strung - but nothing like this - she is completely falling apart at the moment.

Hopefully we will get some of her test results back in a week but I am really not expecting them to show anything.  After that I want to try either the Failsafe Diet or an elimination diet of some sort with her to see if it helps her tummy as well as her behaviour.  My friends who do the Failsafe diet with their kids say the behavioural improvements more than make up for any hassle in following the diet.  I would love to hear more people's experiences so please leave a comment if you've tried it.

I feel like this afternoon marks Emma's official move from sibling status to special needs status - not in the same league as Ashlea - but definitely not like other kids her age.

15 comments:

Big brother, Little sister. said...

Oh Al, I am so sorry to hear this xx it must be very frustrating and sad to see Emma like this xx I hope you find some answers and support ASAP xx

Kerri said...

Sorry, but I cracked up at your new job title. I have been Boo's chief poop inspector and I can confirm that it is not pleasant for any of us. I hope Emma get some answers soon. And that the Cow gets shown the door!

iamhoney said...

The more I read about Emma the more I wonder if she may be on the Autism Spectrum? Has she been tested? Just a thought as it has to be getting especially frustrating.

Anna said...

I am so sorry to read about Emma and her anxiety/tummy troubles. It must be so hard for you all. Is there any foods that she will identify as 'safe' to eat. Like is there something that she really enjoys eating that doesn't make her worry about how her tummy feels? I would start there? Sending you all light and love xo

Caroline said...

Hi Alison,

we've got 2 coeliacs in the family, and most of the rest of us have benefitted from Failsafe, and I'd agree with your friends, it is worth it if your problem is bad enough to make you change what you eat. And I think there's quite a bit more support these days than there was when we started out.

We stuck to failsafe really strictly for some years, as I was terrified about what would happen if I didn't. Fortunately, none of us now react to the full range of things eliminated by failsafe, which means, for example, that though I still have to be really careful with salicylates, I don't seem to have a problem with chocolate (for which I'm very thankful!). Whereas my son gets terrible rashes (and nasty behavioural effects) from chocolate and legumes (legumes are not usually a problem on failsafe) but can eat loads of fruit.

As regards your new title - I take my hat off to you if you've actually been able to collect anything - the only time we were supposed to do that I was completely unsuccessful. All of a sudden it was as if the only time he needed to go, either we were all still in bed (and of course he wasn't going to wake us up) or he must have been at school.

Caroline

mon said...

Alison read this article. You never know what the food and diet can do. She doesn't sound like an autistic child at all, not sure why would the comment above mention it. Way to go to try to make someone feel even worse and instill more worries she doesn't need! http://www.anchoragepress.com/news/the-gluten-made-her-do-it-how-going-gluten-free/article_39e2478e-4585-11e2-a80c-0019bb2963f4.html

Missy said...

Well nothing like having to add another title to your already very busy life. Have fun with that one!!!

mamafrag said...
This comment has been removed by the author.
mamafrag said...

Hi,
I'm Sally from the US.
When I am stressed my gut shuts down. It does not have to be something I am actively worried about, my body experiences and holds stress. After awhile I really don't feel well because I am tired physically too, exhausted, because I basically don't have enough fuel coming in. It sounds like Emma is wired like me. She sounds like an exhausted frustrated tired child. Eating is uncomfortable as my gut wakes back up. Constipation and diarrhea both. If the dr finds nothing germy, maybe this will help: easy to digest foods rice with cinnamon and raisins, toast with jam, soup, things you would feed a young child. Avoid dairy. SMALL meals...2 or 3 bites at time every couple hours.electrolyte drink..gatorade..avoid labeling foods as safe,,,, .this works for me when my gut goes on strike because of stress.....every time....if it works for you....teach her to be aware of her body and self initiate her wellness. It takes away feeling powerless and out of control.

Heda said...

I agree with you and previous commenters...physical problems cause psychological issues. Well worth checking though it must be difficult for the poor little chook.

iamhoney said...

Mon, My apologies, I was certainly not trying to make anyone feel worse....I was only throwing ideas out there! If Emma were mine I would want to hear all ideas.... Again If I hurt mom's feelings in any way...I do apologize. I pray Emma turns it around with the new diet and has many more bright days:)

Alison said...

Thanks everyone - I am open to all suggestions. I even looked up the diagnostic criteria for ASD but she doesn't seem to fit.

We have had our blood taken and I have collected the poop required. If the results show nothing we will try the diet. If that doesn't work we may need to try anxiety meds - which is why I want to try diet first. We have a paed appointment in a few weeks too so I am going to ask her to have Emma assessed for everything under the sun!

Ms George said...

Oh my heart goes out to you. As an adult I've been diagnosed with social anxiety disorder (which people find strange as I'm a total extrovert- it takes a lot of effort!) and there are such clear signs looking back at my childhood that I have always suffered from this. I didn't have issues with food, but would have extreme meltdowns if my ballet tights didn't feel like they were on "properly", would refuse to go to kinder for a week with no explanation etc etc. I don't know what my parents would have done had they had a diagnosis and I don't know what I will do with my children when they struggle- it is genetic- my brother has severely debilitating anxiety. We both inherited it from my Mum who has much more mild symptoms. Best of luck finding a solution. If you don't like your doctor or specialists answer try new doctors until you find the answer for you. This is different to "diagnosis shopping" as every doctor comes with their own bias. Keep at it poop inspector!

Anonymous said...

Hi Alison, I've come to read some of your blogs after mutual friends have commented (thru facebook somehow) in support of your journey, and just from the little bits I've seen, boy has it been a journey! I am amazed that you have shown such resilience and can see that writing your thoughts in the blog has been therapeutic. I'm sure I don't need to even tell you that Emma has been experiencing everything that you have, I'm sure you are all too aware of that. I'm wondering if she has an appropriate outlet to try and make sense of everything she is undoubtedly perceiving but maybe not completely understanding? There are amazing links between physical and emotional/mental health and vice versa. Many of your comments so far are expressing support that you get her gut tested, and it can't hurt to eliminate it, but it sounds to me like you suspect (when you mention that it all started when Murray got sick) that the cause may be more likely to be psychological. So, as a parent of a child who has significant anxiety that impacts realms of life that you wouldn't necessarily connect, I encourage you to seek ways that Emma can come to terms with everything that has been happening and see if this has an impact on her emotional and physical health. I will pray for all of you too xx

Anonymous said...

I've recently been recovering from anxiety and with that had on going stomach pains. One of the best things I have tried was drinking chicken stock. It is supposed to be calming for the stomach and really help with things such as anxiety. I made my own stock from Chicken bones is about 2 organic chicken carcasses (sounds a bit grim!), 2 carrots chopped, 3 celery sticks, chopped, an onion and boil for at least 6 hrs. 10 mins before the end add a bunch of parsley. When finished strain and you can freeze portions. I try to have a cup a day ,fixed with coconut milk. Anyway thought it may be something to consider.